Friday morning Thomas had an eye appointment. It was a long one but we were lucky that our doctor was able to dilate his eyes over his contacts so we didn't have the added stress of removing and inserting his contacts during the exam (that usually tacks on an additional hour at least). Dr. D did a thorough exam and gave him an A+ in alignment (hallelujah for continued strabismus surgery success) and shocked us both when he informed us that his contact prescription did not need to be changed. This was his first appointment ever that his vision hadn't changed. It's not necessarily a good or a bad thing because we aren't 100% positive what his current vision even in. Our doctor explained that oftentimes aphakic kids (kids that have had their eye lens surgically removed) learn to navigate their world with terrible vision so it appears they can see well from our perspective when in reality it's all they know! Anywaaaaaay, we also received some big news that Thomas is now eligible for his next surgery -- the Intraocular Lens (IOL) implant. Now that his eyes have reached their full maturity in size (fun fact: eyes reach full adult size at 2 years of age) we need to be thinking about having the permanent lens surgically implanted within a year. After this surgery he will still need contacts but will then have the option for glasses too.
During our visit we also gave our doctor a gift -- a bow tie (his favorite accessory) and a scrapbook featuring Tom's eye journey since he's been under his care. He loved this so much and thought it was the most thoughtful gift ever. But what we didn't expect was his idea to show the book to his patients who show up in his office with a newborn baby scared to learn all about their child's cataract diagnosis. He can flip through the pages with them to ease their fears and show them what an extremely successful outcome looks like and all the steps and procedures along the way (patching, contacts, surgeries, recoveries, etc.). For readers stumbling on this page looking for cataract answers and support, here is a digital version!
On Friday evening we joined our friends, the Edwards (Caroline's best friend Austin), and a few other families, for a super fun pizza & pool play date. The kids splashed around for hours and ate their weight in pizza before crashing hard into bed.
Early Saturday morning we visited Matt's office to grab some files before stopping for cinnamon rolls for breakfast. The kids had a blast running through the halls, climbing the reception desk and nosing around a few of the attorney offices (sorry Jen & Rachel). And this is why they rarely get to visit during business hours.
I see you, stack of lunch boxes that haven't found their way home!!!!
Side note: I am obsessed with these $12 sunglasses and have received so many compliments on this embroidered top that is 40% off!
Later that morning our longtime handyman, Hector, arrived to make my to-do list dreams come true. He fixed and replaced so many things around the house that we haven't had time to address. Matt is one hell of a lawyer but definitely does not pretend to be a handyman -- especially when it comes to wires! Anyway, Hector repaired our broken garbage disposal, replaced all the weather stripping in the house, removed a super old door chime and a few broken fire detectors then patched & painted the holes in the walls, repaired our broken gate in the backyard, fixed our front door (it's been jammed shut and we couldn't open it) and fixed the kids' bathroom ceiling water damage from a recent roof leak. He is amazing!
The yellowed fire detectors looked like alien spaceships to me. Since we've moved in these things have creeped me out and I couldn't have been happier to say goodbye to them!
Meanwhile, Caroline gave Thomas makeup lessons to distract him from interrupting allll the projects around the house.
After naps we joined the Samuelsons at McKinsey's parents' house for another pizza + pool play date! McKinsey's parents just finished a major pool renovation and had us over to enjoy the new pool! We also got to see just how NOT scared of the pool Thomas is. He is so wild and fearless.
On Sunday we took Thomas to get his first hair cut!
We asked Caroline if she wanted to get hers cut too but she felt
strongly against it (& daddy wasn't quite ready either). However,
Tom did fantastic and was hilarious the entire appointment. He was so
excited about sitting in an airplane that he didn't even notice he got a
trim.
He looks so dang cute I can hardly stand it!
Last stop of the weekend was Cowfish at Caroline's request. She is so obsessed. And because both kids ate well and behaved themselves they cashed in (literally) on my penny bribe for the fountain!
How are you 18 months old already? You are entering into one of my very favorite stages of toddlerhood and I couldn't be more excited to watch you grow into an independent little man. Don't get me wrong, I am going to mourn the loss of your delicious chubby legs as you continue to grow, I'll weep like a baby when we finally trim your mullet (and your sissy will too, in envy) and I'll give you whatever you want once you master "I love you." But my goodness, I love watching you try to do everything your sister does, listening to you slur words in attempt to chat, and to see your dancing skills getting funnier and funnier. This season is filled with bittersweet moments and milestones. I love you so, so, so much.
Love,
Mama
PS - thank you for being my only child to eat what I cook. Even if you throw half of it on the floor, ceiling and walls. I love you.
Now that we have the sappy stuff out of the way, here are a few things about your little life the past few months:
At 12 months you started climbing on things in a way your sister never did. If left alone for a few minutes we'd find you sitting on top of the back of the couch, standing on the dining room table or pushing chairs over to larger objects of furniture to go higher. You also had the absolute worst case of HFM right after your first birthday -- it was awful, but you were a champ!
At 14 months you officially took off on your two little legs after two months of practice. You also started saying "up," which is still one of my favorite first words ever. You also rocked the heck out of your strabismus surgery and we got the green light to stop patching!
At 17 months your temper tantrums escalated to a whole new level. If we take anything away from you or heaven forbid tell you "no" you throw yourself on the floor, starfish out and begin rolling back and forth through screams and sobs.
As soon as we say "bath time" you are the first (and the only) to skip right over to the tub and strip down.
No to jinx anything, but for the most part you are our solid little sleeper. You don't pull nearly as many regressions and no-sleep phases as your sister did.
You are a man of few words but you're really loving "turtle" and "more" and "nana" (banana) and your personally favorite -- "sissy!"
You eat anything that isn't green and MUST be greeted in the mornings with a banana when we come get you out of your crib. You are the hangriest little tot I've ever seen, otherwise you are pretty happy. You also love to help yourself to the snack drawer and can frequently be found walking around looking for someone to open your applesauce pouch.
Favorite song: Jesus Loves Me
I am absolutely convinced that you are going to be gifted to play an
instrument. I've never seen a toddler love instruments and music as much
as you.
Other loves: brushing your teeth, using utensils to eat, the drawer of pots & pans, giving hugs
EYES UPDATE! Thomas' eyes definitely deserve their very own update. In September Thomas had strabismus surgery to correct his eye alignment and improve his vision. The surgery goal was to turn his brain on to use both eyes together (not just one and shut down the other). Within a few days we saw a remarkable improvement in his vision. We noticed Thomas getting around better and he seemed like a whole new little man. Oh, and we no longer had to patch him -- hallelujah! And so we were happy, happy, happy. And thankful. Very thankful.
But we've been warned a zillion times that this journey will continue to take us on a roller coaster of highs and lows. And shortly after we celebrated his successful surgery we were battling our next challenge -- contacts. Now, we've been extremely blessed (more than the usual cataracts baby) with contacts thus far as they usually stay in his eyes for the most part. However, out of nowhere Thomas began losing contacts -- frequently. This is extremely frustrating because when one or both of his eyes lose contact attention it shuts down, turns inward and his brain starts signaling him to go blind (very scary, as you can imagine). So all the progress we made with strabismus surgery basically went down the drain the second we lost a good contact fit. For weeks, at daycare pick-up we'd find him without contacts, eyes pointed in and unable to see at all (cue the deepest, darkest working mom guilt).
So back to the eye doctor for frequently appointments we went. The process went a little like this:
Undergo a full blown eye exam (now with an extremely squirmy toddler) to take new measurements of his eyes (diameter, base curve, power)
Doctor orders new set of contacts (which takes 2 weeks to make from scratch)
Test new contacts for about a week and report back to the doctor on fit
Doctor adjusts one, two or three of the measurements and re-orders contacts
Repeat steps 1-5 until we nailed a contact size that would stay over his pupil and not pop out or slide into his eye lid. This took 10 rounds of contact trials.
Yes, we went through this process 10 TIMES. This was probably one of the darkest times for us as we just couldn't find a good fit no matter how the measurements were tweaked and we continued to see his vision plummet with each passing hour. Thomas was also losing 1-2 contacts a DAY -- for months. And these contacts cost us $200 a lens and are not covered by insurance. Our doctor told us this is when most families give up because of the financial burden and switch to glasses. But he encouraged us to stick with the contacts because glasses aren't recommended for improving vision, just maintaining -- and we had a lot of improvement to catch up on. So for several months Matt and I were at a loss. We were angry and sad.
However, our most recent set of contacts seem to be doing the best so far...until Thomas outgrows them and we have to start the process over again. Despite the frustrations that we've faced we are beyond thankful for contacts and how far we've come in this journey.
***
FOR MY FELLOW CATARACT & APHAKIA MAMAS who follow my blog for support, advice and encouragement, I wanted to share a short video and some tips that Matt and I created for a FB support group we're in on how we change Thomas' contacts. **Note: Thomas currently wears soft lenses, not hard lenses.
Contact tricks we've learned along the way include:
Wait until baby/toddler is asleep, but not too asleep to change contacts. We remove the contacts when Thomas is tired but wait until he is asleep to re-insert them. This also allows time for the contacts to soak in the solution while you're rocking your baby to sleep! If he is too far asleep he won't tolerate his eye lids being messed with, so we have to wait until he just starts to drift off to sleep.
Make sure you've washed your hands really well before handling the contacts and keep a dry paper towel nearby to dry your fingers so you can handle the contact without it slipping around.
Pinch the eye lids together to remove the contact rather than using your fingers. It took a trip across the state to a contact lens medical doctor (yes, those exist!) to learn this trick.
Rub the eye lid a bit before lifting so it doesn't startle the baby. I usually caress his little face, run my fingers over his closed eye lids and rub his lids gently so he is relaxed.
Lightly fold the contact into a taco shape and lift the top lid as much as baby will allow. Then, just before inserting the contact, quickly and gently pull the bottom lid down too.
After the lens has been inserted into the eye rub the eye lid to help massage it into place. There have been times we inserted the contact and it got stuck folded in his eye or wasn't in all the way and pops out overnight. I like to peek into the eye one more time to make sure it's centered before laying him down for bed.
Last tip -- be patient and hang in there. Changing contacts can take us up to several hours at times, and longer if awake. Also, this video was 3 clips out of 30 attempts.
*Also, if anyone has tips for changing contacts with baby AWAKE please share!!! On the occasions we are forced to do this, it is torture for everyone.
I wanted to pop in with a quick update on Thomas! Yesterday our little man had a very successful strabismus surgery. We were home by lunch and our loopy Thomas took a very long nap and woke up back to himself - running around, inhaling packets of food and searching the house for his sissy. His eyes are still very bloodshot but we can already see a tremendous improvement in his alignment. Also, a surprise to us, our doctor re-inserted his contacts at the conclusion of surgery so Thomas can see! We were really worried about him not being able to wear his contacts during recovery but our doctor felt confident that Thomas would do okay with them in.
Also, I mentioned how worried I was about how Thomas would do missing breakfast since he wakes up hangry and to my surprise he did terrific. He was so distracted at the hospital with all the lights, noises, machines, doctors, nurses and patients that he didn't even notice he missed his favorite meal. Also, the night before his surgery Caroline helped us pack a bag of all their favorite toys so he could have them at the hospital. It was so sweet watching her meticulously pick out the things they love to play with most -- the drill, a cell phone, stuffed animals, her old purple paci and more.
We are so grateful for a 4th successful surgery for Thomas and for all of the prayers! I cannot believe that between Thomas and Caroline we have FIVE infant hospital gowns in our collection. Crazy. But we are beyond thankful with how far we've come in this journey with Thomas and are excited for the future. Off to his surgery follow up appointment this morning...
Today marks the one year anniversary of Thomas's surprise cataracts diagnosis. While I've posted many positive updates about our little man's miraculous progress over the 12 months, I can honestly say we've never endured a more difficult year. Admittedly, I have
kept a very positive outlook on the blog since his diagnosis. However, behind the screen our family
has gone through a rollercoaster of emotions: grief, hope, anger, devastation,
confidence, anxiety, worry and more.
There is nothing more terrifying than
learning your child is among the .04% of babies born with an unexplainable diagnosis
and the emergency medical decisions you are forced to make with no information
or understanding. Then comes the whirlwind of frequent doctor visits, second
opinions, third opinions, fourth opinions, late nights of obsessive researching,
patching, eye drops, contacts, additional surgeries to prepare for and more. We
are constantly worried about Thomas
and his future despite the four opinions from doctors who predict he’ll live a
normal life with some inconveniences and limitations.
I am fully aware
that our circumstances could be much worse and there are many parents struggling
and coping with cancer, wheelchairs, heart defects, premature babies, down syndrome and more.
Unfortunately these devastating medical diagnoses are all too common and I
honestly can’t imagine what these families are going through. However, a wise
friend told me at the very beginning that just because my family isn’t struggling
with a worse medical condition it
doesn’t make our unique journey less significant or less difficult.
I hope and pray you don't ever need the advice from this post. However, over the past
year I’ve received many emails from readers currently staring down the barrel of a scary medical diagnosis, many of which were unexpected, with their child, a child of a close friend, or family member. I am always deeply
humbled when these readers reach out to me for advice, encouragement or
inspiration. Oftentimes I’m truly at a loss to find words to bring
comfort to parents struggling in their own battles but today I’m going to share
some raw feelings and 3 of the biggest lessons we’ve experienced along the way
so far.
But first, a huge hug to you if
you’re on a difficult journey!
1. Expect Ups and Downs. Even though we have settled into our new normal, this journey still drags us through some ridiculously low places at times. Receiving any sort of unexpected diagnosis, especially a rare condition (with very little research available), is devastating. Make sure to honor your feelings as they come. You will undoubtedly grieve. You will cry. You will be angry. You will be terrified. We've learned to take things day by day and mostly vacillate between ridiculous optimism and profound sadness. But, in time the shock began to fade and we now have more good days than bad. Also, Matt and I don’t always experience the
same emotions simultaneously so it’s important to recognize when your spouse
is struggling or spiraling down a rabbit hole of emotions. Additionally, for me Thomas's diagnosis came with a unique layer of mommy guilt too. I've been told over and over and over again that there is nothing we could have done to prevent congenital cataracts but I've spent my fair share of nights scouring the internet wondering what I did wrong during my pregnancy.
2. Trusting God’s Plan.
I’ve always strived to live a joyful
life and previously considered my faith unshakeable, using obstacles to spiritually strengthen
my relationship with the Lord. However, there have been periods of time over
the past year where I gave up talking to God. In fact, Matt and I even stopped attending
church shortly after Thomas's diagnosis. It seemed insincere to choose faith and joy while actually crumbling in the
inside. I can’t tell you how many times I’ve been told “God gives His toughest
battles to His strongest soldiers.” While there may be some truth to that, trusting God’s plan and choosing joy takes time. Over the past year we've refocused our perspective to see the blessings in our journey -- Thomas is a strong, resilient little man, and he makes me a better and more empathetic mother. It is a hard calling but God has done us a favor because of the depth and perspective that we all now have because of our precious son. We are learning that our whole lives have been preparation for us to raise our sweet Thomas with all that entails.
3. Ask Others to Pray on Your Behalf. During
those times you can’t talk to God, ask your prayer warriors to help carry your
burden through prayer. I am so blessed to have friends who routinely check in to let me know they are praying for Thomas, for me, for my family, for our doctors, for the next surgery, for the recoveries, for Thomas's future and more. These prayers have pried me out of some dark places and replenished
my spiritual strength when I needed it most.
In conclusion, despite the pain and grief you may be facing as a result of unexpected news about someone you love so much, remember that every single day is a gift. You are prepared (more than you know) to be the parent of this amazing little person. And that amazing little person, and his/her siblings, are learning to be strong just by watching how you tackle the daily journey. Hang in there dear friends. Easier said than done, I know.
It truly means so much to me when my readers request an update on our little man! Thank you all so much for caring about him! We actually do have an exciting update...
Thomas recently had an appointment with his pediatric ophthalmologist. Matt and I are always so anxious for these appointments. They usually take up to three hours (sometimes more) waiting to be seen, checking eye pressure (for glaucoma -- a high risk side effect from his initial cataract removal surgeries), doing an eye exam over his contacts to check the prescription, removing the contacts, dilating his eyes, waiting 30 minutes, sometimes re-dilating and waiting 30 more minutes, doing a second eye exam without contacts and then putting the contacts back in and sitting through a consultation...with a 13 month old.
BUT for our first visit ever the doctor informed us that we would not need a full eye exam and instead did a vision test in a dark room with light up toys to see how Thomas tracked them at various distances and angles. Our doctor was thrilled to let us know that he could see a tremendous improvement from all the hard patching work we (and our teachers -- they definitely deserve a shout out) have been doing.
At our last appointment almost 3 months ago we were instructed to get a lot more aggressive with his patching. So for the past few months we've been patching his "good eye" (left eye) to force him to use his "bad eye" (right eye) most of the day. He hates it (understandably) and we do too but he is such a trooper. The goal is to get both eyes working as close to equal as possible before we move forward with strabismus surgery. And we made it! So the doctor cleared us to schedule Thomas's surgery. And we received a date this week!
On September 28 at 5:30 am Thomas will undergo strabismus surgery!!!!
Wait, what is strabismus? Strabismus is a vision condition when the eyes are misaligned, commonly known as "cross-eyed." Thomas has the type of strabismus where usually one eye (but sometimes both) turns in intermittently. Once it turns in the brain shuts it down and he exclusively uses the opposite eye which greatly affects his depth perception.
During surgery our doctor will go in and tighten the muscle in each eye to pull it back to center. The biggest risk for this procedure is the likelihood we will need up to two additional strabismus surgeries to completely align his eyes.
We were also kind of surprised to learn this recovery is actually tougher than his cataract removal recoveries. Thomas will receive a stitch in each eye which will feel very scratchy and greatly irritate him. He will want to rub his eyes obsessively which will be painful. Additionally he won't be able to wear his contacts for at least 3 days after surgery while he heals and we administer eye drops throughout the day. And as you know, no contacts mean NO VISION at ALL for him so that makes us a little sad.
BUT this surgery is huge for us and for him! This takes us one step closer to improving his vision. And for that we are extremely grateful!
As for an update on his vision, we've seen a tremendous improvement in his eye sight with the help of a new contact prescription. We still won't know exactly what his vision is until Thomas can read an eye chart but we have seen a difference at home. Around 3 months ago we notified our doctor that Thomas seemed to do well with objects up close (eating, toys, etc.) but wasn't interacting with us at distances more than several feet away. For example, at pickup he wouldn't even know I was in his classroom until I'd reach down to pick him up or he'd hear my voice (and yes, this would shatter my heart every single day). The new contacts are a much weaker power to allow him to practice seeing things further away. And it's working.
Contacts are definitely as challenging as you can imagine but we are beyond thankful for them. If you've ever had the frustrating job of clipping a toddler's toe nails or snot sucking a sick child, times that frustration by about a million and you can kind of get an idea of what it's like to regularly change, clean and re-insert contacts. I wish I could say the contacts have gotten much easier with time but they've only brought new challenges as Thomas has gotten older. He's less tolerant of us messing with his eyes and is exposed to more activities that keep our anxiety levels at an all time high (ex: water play at school, swimming, etc.).
But through it all we are extremely grateful and blessed that God chose us to be Thomas's parents. And we're learning that God has prepared Matt and I our entire lives for all that this journey entails. Thank you all for the prayers and support for our little man. It definitely has not been easy (another post is in the works on how we've learned to cope, grieve and find joy in this journey) but we wouldn't trade it for the world.
Early Saturday morning we visited Matt's office to grab some files before stopping for cinnamon rolls for breakfast. The kids had a blast running through the halls, climbing the reception desk and nosing around a few of the attorney offices (sorry Jen & Rachel). And this is why they rarely get to visit during business hours.
